#StartAsking Ok, I’ll Ask the World

7 Things To Know About Infertility

Dear People in the World,

In the spirit of this year’s National Infertility Awareness Week #startasking theme, I’m asking you, people in the world, heck, I’m imploring you, once and for all to please take the disease of infertility seriously.

I know there have been a few more articles on infertility in the mainstream media these days. It’s possible people might find themselves feeling a bit more informed, yet I want you to know we in the infertile community feel as insular as ever. The message from infertility advocates on the scene for years is this: while in recent years there are many more people with the disease of infertility writing and speaking, the level of awareness and compassion in mainstream society hasn’t budged much.

Infertility is a disease that affects one in eight people.

One in every four pregnancies ends in a miscarriage.

One in every 160 births is a stillbirth.

These numbers point to many things, including this one cemented truth: for those of you who are not directly affected, infertility and its related grief and trauma are going on around you all of the time. In the check – out line at the grocery store, in the waiting room at the gynecologist’s office, in your yoga classes and at social functions.

It is typical that those of us who are affected are passionate, tenacious and determined. We are also often in great pain and are in the midst of grieving one loss or another (as that is the healthy thing to do). We are susceptible to PTSD and have sustained injuries to our hearts and spirits often impossible to describe with mere words.

Many of us undergo a plethora of very real medical procedures, many of the long term risks still unknown, and are severely financially compromised because of it.

We are people who are doing our best to cope when something so basic, that is an effortless acquisition for so many others, is taken from us. I am asking you to please take this pain seriously.

We are also your nurses and doctors, your teachers, your food servers, your lawyers. We are your friends, co-workers, neighbors, siblings, aunts and uncles and yes, your daughters and sons. We are also, all too often I’m afraid, the silent ones. The ones who smile and nod as we listen to parenting woes and accounts of other people’s children while our equally valid experiences fail to make the cut into human conversation. We are the ones who slip away from conversations after we dared speak our truths, all too frequently minimized with “just relax”, “stay positive” “your time will come” and other such irrelevant disconcerting platitudes. I am asking you to please take the social isolation that comes with infertility seriously.

But, I am not just concerned for those affected by infertility. I am concerned for the greater collective. What good does it do any of us to have so many suffering in silence without the support they need? People suffering in silence who are guilty of nothing, nothing but going about their lives and trying (or having tried) to expand their families.

I, like many survivors of infertility, am concerned for the generations that come after me. When I speak out about infertility and childlessness and am treated with disdain or indifference by someone with children, I worry. What if one or more of THEIR children is the one in eight? Will they get the support, acknowledgement and love they need from their parents? I am asking you, for the sake of future generations, to please take infertility seriously.

Infertility will always be life shattering, but those of us who have been there, differences and all, agree on one thing: This experience does not have to entail having injury added to injury by a lack of support from our fellow humans. Things could be much better for the next generation on many fronts, medically, financially, and in what I am asking for your help with now, socially.

This is not an easy thing, this un-silencing of something so a part of the human experience that has been silenced for way too long.

And I’ll be frank with you all, I don’t have much talent when it comes to brevity. I’ve issued numerous posts on my blog that analyze and perhaps belabor the experiences entailed in infertility and involuntary childlessness. I’ve written many more that deal with the infinite shades of gray involved in healing from trauma and mourning life altering loss.

However we need a starting point, something that answers the natural “Well what do you want ME to do about it?” question in a way that is somewhat reasonable. And it’s hard to lay out reasonable ways to make infertility less worse when the experience itself is the epitome of UN-reasonable. Not to mention layered and complex.

So here they are. Being basically informed is a great step, and who knows, it may just even be enough.

1) The losses that come with failed fertility treatments, miscarriages, stillbirths and failed adoptions are real. And so is the trauma. This study showed diagnosable PTSD in subjects who had undergone fertility treatments to be at a rate of almost 50%. (The rate of diagnosable PTSD in the general population is approximately 8%). Research has documented women experiencing infertility have incidences of depression similar to cancer patients and cardiac rehabilitation patients. This article takes a fascinating look at what women with infertility have in common with other trauma survivors. The comments from people who have experienced both cancer and infertility and both rape and infertility are revealing and gripping. On behalf of the entire infertile community, I’m asking you to please take this seriously

2) We have the right to grieve and take care of ourselves, the same as people with other life altering struggles. This can mean anything from turning to a hobby or activity that gives us a break to avoiding certain social situations to protect ourselves emotionally. Many of us need to opt out of baby showers for example. This is not a petty act of jealousy but rather a courageous act of self – care. We don’t like having to make these decisions as the result of pain we didn’t ask for. I’m asking you to please prioritize the well – being of your loved ones above social routine and conformity.

3) Do you assume that when you speak you do not have anyone around you who has just suffered a miscarriage, a failed fertility treatment, or like me who tried everything to have children but couldn’t? The numbers show you are likely wrong. We don’t have to all go changing our speech patterns here, but mindfulness that there are probably people around you dealing with such harsh trials would be a fantastic thing. I’m asking you to please consider our presence when you speak of all things children and parenting, and to remember when you speak that human reproduction is hardly a given.

4) Fertility treatments have a very high failure rate. In 2012, of the 1.5 million fertility treatments performed globally, 1.1 million failed.

5) It’s ok to stop trying. It’s ok to stop pursuing a family with children. Messages like “Never give up” and “You have to have hope” can be very negative and damaging for those who don’t find them helpful. For my husband and me, harsh reality was significantly healthier than false hope. After one surgery, ten fertility treatments and a veiled tricky medical case that brought endless twists and turns, we stopped trying to conceive. Lacking the necessary financial and emotional resources to engage in the adoption process as we approached the age limits involved, we ceased the pursuit of children. This action was excruciating, but we were at the point of needing to save ourselves from financial, emotional, physical and psychological ruin. And we wanted to be able to enjoy our wonderful marriage once again, some way, somehow. Self – preservation is as noble of a cause as any.

6) I’m asking you to please have a more fair and accurate view of childlessness. Almost 20% of women over the age of 45 do not parent in the United States. While childlessness is almost always assumed a choice, more often than not it isn’t. I’m asking for the “selfish, money mongering full of time and no responsibilities” stereo type of people without children to come to an end. We are more often than not dedicated loving people who make contributions every bit as real and important as anyone else’s to society, our communities and to our families. Many of us also come with the wisdom and grace inherent in reconciled sorrow and self re-invention. And on a personal note aside from my own childlessness, in my adult life I have been considerably more shaped, inspired, educated, nurtured and mentored by people without children than by people with children.

7) I saved the simplest, most black and white one for last: I’m asking that we delete “just relax and take a vacation” as a possible answer to someone’s infertility. While the points above require a bit more contemplation, this one is a total slam dunk. No one struggling to conceive likes hearing this. And I really do mean NOBODY EVER ON THE FACE OF EARTH. “Just relax and take a vacation” is not an appropriate response to someone’s disease. Yes, infertility IS a disease as classified by the World Health Organization. When we are averting someone’s pain, things get complicated. That’s where all of the harmful platitudes come in. When we are acknowledging someone’s pain, it’s simple. “I’m sorry you are going through that” is a great response. For someone you know more closely, “please let me know how I can support you” is a most wonderful gesture. It may not always be met with a coherent response, as infertility is both clobbering and complex, but it does no harm and lets someone know you are there for them.

It has been proven that a loving non – judgmental community of any kind facilitates healing. One other thing my infertility community agrees on? Whatever our outcome – child free not by choice, adoptive parent, or parent through fertility treatments, we have all been profoundly rocked to the core and forever changed by our experiences.

People who get the right support and acknowledgement from their loved ones will heal more quickly. They have a better chance at arriving back at wholeness. Their nervous systems will suffer less trauma. They will mourn more fully and will be healthier in every way because of it. The will suffer less alienation and isolation. And if they are like me and my husband and their battle must come to an end and they were unable to acquire children for any reason, acknowledgement, abidance, encouragement and acceptance from others will be materials essential to the life rebuilding process.

Most Sincerely,

Sarah Chamberlin

Wife, Daughter, Sister, Aunt, Friend, Flutist, Yogini, Writer, Blogger, and Child Free Not By Choice Survivor of Infertility and IVF Veteran hoping to help make the world a better place

16 thoughts on “#StartAsking Ok, I’ll Ask the World”

Wow! Spot on! I wasn’t aware of the studies about infertility and PTSD, but the results are not surprising to me. Thanks once again for sharing your gift for expressing this pain that most of us can’t put words to. I wish I could shout points 1-7 from the rooftops.

Thank you for #5. It is just now that I am feeling “permission” to say this is where I am. I’ve so many “don’t give up” messages come at me over the years that I truly do feel like I somehow simply quit or just shrugged my shoulders and casually said “I’m done.” Not the case! It has been an agonizing and heart-wrenching process that no one seems to really understand. I wish more people did!

It’s rough – we have people’s oblivion regarding what we go through coupled with our goal oriented illusion of control culture. And then there are those in the infertile community who can be the worst offenders, constantly promoting hope and never give up as if it’s “better”, when in fact we have more than one definition of success in this community.

Thanks for sharing – ceasing the pursuit is a lonely, obscure process. I was reflecting recently on how agonizing it was for us to explore adoption and realize it wasn’t going to work for us. That in and of itself was a loss, a loss that occurred within months of the loss of our bio children, and I didn’t even realize it was a loss until over 1 year later!!

My years of infertility were a black hole of pain. I was shocked at how many around me suffered the same cruelty – friends and my step-brothers and their wives. I lost friendships as I withdrew. My mum would send endless articles through the post. My sister told me how tedious she found the family ‘infertility victim club’ I ‘shared’ with my brothers. I hated the years of tests and the incredible insensitivity of locating infertility clinics in maternity clinics. I saw no point to my life. Each month was like a bereavement of hope, so we avoided sex so we could avoid the crashing despair that came with each monthly period. My infertility was life at its bleakest. There was no point to life and no point to me.

Rosie, I really appreciate you sharing this honest account of your experience. People need to know the deep level to which infertility affects and alters people, and when accounts like yours are shared we all feel less alone.

I had to grieve hope as I knew it too, actually I grieved hope altogether for awhile. It’s returning in its new form ever so slowly.

And I hear you on the pointlessness – I always said that trying to make a baby is really no way to live, I think what we go through is either more than limbo, or, limbo doesn’t have the bad rap it deserves.

I’m SO far behind on reading blogs, and catching up now. This is such an awesome post. It is something I’ll use as a reference to send to others who don’t get infertility. Thank you so much of sharing all this. It’s amazing writing and it breaks it all down so well.